new here and scared

waitress169

Had mastectomy 11/22. 2.2 cm tumor. Grade 3. Wiil know more 12/26 after onc. What is scaring the crap out of me is being HER2+. PLEASE anyone with positive feedback? Went thro everything (months of testing and lumpectomy and scans mri guided biopsy and finally mastectomy)  pretty good till this.

chrissyb

Hi Waitress and welcome to BCO.  There is now a drug called Herceptin that is used to treat HER2+ cancer and by all accounts it works very well.  On the BCO main site (click on the line at the very top of the page) has a lot of information about the differnt treatments and the drugs that are used including side effects.  Perhaps you could check that out to help you.

I'm sure there will be a lot of other ladies here to help you who have the same diagnosis.  I wish you well and goodluck.

Love n hugs.  Chrissy

waitress169

Thak You Chrissy Just looking at the ststs under the posts makes me feel better.

chrissyb

There are a lot of ladies on herceptin and from what I read they are doing quite well on it with not too many SE's.  This jouney can be a rough one for all sorts of reasons but it doesn't have to be a short one, it can go on for many years with treatment.

I'm glad you are getting some comfort from the ststs under the posts.................BCO is a good place to find comfort.

Love n hugs.  Chrissy

rachelvk

Waitress - I can't give you much information on Her2+, but chrissyb is right about lots of women doing well with herceptin. I know how scary it is to look at one particular aspect of our diagnosis and panic. I'm triple negative, which is supposed to be the 'bad boy' of cancer as my BS put it, plus I'm grade 3, but I know women with her2+ also have a lot of worries. Each of our stories are different, and it's our job to get out there, get all the information we can, find a good team of doctors we can work with and give it our all, no matter what type of cancer we have. Feel free to turn to us any time we can help.

sheila888

Hi Waitress....I received Herceptin when I was DX in 2005 Herceptin just got approval for early stage BC. And 6 years 8 months I'm still doing fine.

Good Luck to you.

Sheila

♥

Corinne6

Hi, I was diagnosed Her2 and Estrogen positive in 2007. Stage 2a. Doing well!! Herceptin is a Godsend.

waitress169

Hi Corinne6 , Thanks for posting. It's helps being on this forum.

AlaskaAngel

Hi there,

As you can see by my signature I didn't even do trastuzumab, or much of anything after chemotherapy, because when I was treated trastuzumab wasn't even available to me. Adding it should give you an even better result, in case you happen to be one of those who benefits from it.

AlaskaAngel

waitress169

Good health and God Bless

orange1

It is very scary being newly diagnosed with Her2+ cancer, especially if you read a lot of old articles and see "poor prognosis" in print about 1000 times (like I did - I had myself convinced I was going to die).  The good news is that now with Herceptin + chemo the majority of women do well, even women with larger tumors and positive nodes.  Our prognosis has really changed. 

BlairK

My wife had a double mastectomy on 10/14 and had 3.5 mm invasive ductal carcinoma with negative nodes and HER2 positive and ER positive.  She has two conflicting opinions - one to treat with chemo + herceptin + Arimidex and one to treat just with Arimidex.  My wife will have a third opinion consultation on 12/12 but has pretty much made up her mind to start chemo + herceptin on December 20th.  In your case, you have a much larger tumor at 2.2 cm than with my wife.  Was your tumor node negative (you would be Stage 2) or node positive (you would be Stage 3).  Are you estrogen receptor (ER positive)?  In any event, there is no doubt in your case - the guidance and research is clear (as opposed to my wife's situation which is very unclear because of a small node-negative HER2 tumor).  Your oncologist will surely recommend chemo and herceptin.  You will most likely have at least four possible options.  The most aggressive is called AC -> TH.  Adriamycin and Cytoxan followed by Taxol and Herceptin.  This is used for more advanced cases of HER2 positive breast cancer so whether or not your cancer has spread to the lymph nodes is an important factor.  TCH(1) - Taxotere + Carboplatin + Herceptin.- one treatment every three weeks for six treatments and then Herceptin once every three weeks for a year.  If your tumor is ER positive then after the chemo is finished you will also have to take tamoxifen (if you are not menopausal) or arimidex (if you are menopausal) - one pill a day for five years.  My wife's current recommendation is TCH(2) - Taxotere + Cytoxan + Herceptin - one treatment every three weeks for four treatments and then herceptin once every three weeks for a year.  Again, Tamoxifen or Arimidex after chemo one pill a day for five years.  My wife will have arimidex as she is almost 53.  Finally, a more experimental protocal is Taxol + Herceptin - one treatment every week for 12 weeks followed by Herceptin one treatment every three weeks for a year and Tamoxifen or Arimidex if you are ER positive.  The main danger with herceptin among many side effects is heart damage - a 2 to 3 percent chance.  If you also receive AC->TH then adriamycin can also cause heart damage.  With the other chemo treatments, there are many side effects - loss all your hair, fever, chills, nausea, diarrhea, neuropathy, and many others.  You would receive various pre-meds such as steroids and anti-nausea drugs.  For heart damage, they will monitor your hear every three months using a MUGA heart scan and would stop Herceptin if the ejection fraction falls below 50.  My wife has an ejection fraction pre-chemo and pre-Herceptin in the 70s.  Tamoxifen and arimidex can cause bone and joint pains.  Anyway, you have until 12/26 to do a lot of research just as I have for my wife.  There is a lot of information here and on the internet.  You can go to NCCN.com (National Comprehensive Cancer Network) and read 100 page comprehensive powerpoint, you can go to herceptin.com to read about herceptin.  I have tried to do a brain dump for you.  Please let me know if you have any questions.  You can visit my thread under name of BlairK (HER2 bulletin board section).  Good luck and happy holidays.  BlairK

AmyIsStrong

When I was waiting for results on my her2 status, the doctor said "This is one time you want to see a positive result" and explained that Herceptin actually improved outcomes SO DRAMATICALLY that they were glad when they saw a Her2+ patient, which I did turn out to be.

I never looked at that old research, so I always felt that being Her2 was a GOOD THING. Then, much later, I learned how bad it used to be.  So be encouraged - this new med is going to help you. I am almost 3 years from original diagnosis and doing fantastic.

Also there is a thread for TCH on this site that has a very lively and supportive group of women who have had or re currently going through that treatment regimen. If that is what you end up doing, please feel welcome there. You will be able to get ANY/ALL questions you have answered and a lot of support.

Amy 

Moderators

waitress, as well as the encouragement and personal experiences you'll hear from the wonderfully supportive members here on the forums, the main Breastcancer.org site has a wealth of factual information. You might want to check the section on Chemotherapy as well as the Targeted Therapies section (which includes Herceptin).

Judith and the Mods

waitress169

Thanks for such good info BlairK. Will get the full report on the 16th. I do know the sentinal node was clear and the tumor was2.2cm. I am post menopausal trying to understand how life can change so very quickly.

April2

When I was diagnosed in June, my oncologist said she would have hoped that I was HER2/neu positive because more drugs are available. In other words, she considered it good news and believed it improved my chances. I wish you the best.

waitress169

I remember when I told I had bc I cried and then thought of all the people I knew who had it and went thro it OK. I now know they just made it seem easy. I know now how scared they were and how many Dr"s and tests they went thro. I know now how they hated looking at their surgical site and couldn't believe it was their body. I know now that I have to get myself together because I am luckier than many and take charge of this and get on with life because this is what people with cancer do.

PlantLover

Much as others have said, my oncologist said that being HER2 was actually a positive now thanks to Herceptin.   I'm two years out since my first chemo/Herceptin treatment.

Estepp

Girl..... being Her2 used to be um.... not so good! Well.... in the past few good years...... Her2 is become more of the " good" dx than the bad one. Herceptin... out target drug.... is working ..... with chemo and long after chemo..... WORKING!

I had a 3 cm + tumor....... lymph nodes involved.... ETC......

I did ALL treatments that were protocol in 2008: Chemo, A.C.T. and Herceptin.... mast..... radiation....... and more Herceptin for a year.............

Here I am............ going into 2012~ Clean bill of health! 

In 2008.......... I was a MESS. thought I was the only one who got cancer young.... NOPE! Guess what... all those ladies.. I went through this with......... here on BCO..... all 27 of them........ all still alive.... still living life !

God Bless you !

Laura

waitress169

God Bless  and thanks for answering. It's good hearing that you are healthy.This site feels like a lifeline to what can be.

Leslie1962

Look at my stats. Two years out and doing fine. Did AC, Taxol, Taxotere, 1 year Herceptin plus rads. Feeling great.

KarynS

Hello, just joined and I am also new here and very scared.  Was just diagnosed with Ductal Carcinoma in Situ.  Seeing a radiation oncologist tomorrow and surgeon friday.  My path report reads:  High nuclear grade, (DIN3), comedo type with retrograde cancerization of sclerosing adenosis.  Have not idea what it really means, but my gut tells me it is bad..

 Not sure what to expect, radiation, chemo, tumpectomy or mastectomy?   I do not even know right now what stage I have.  I also had an MRI with contrast yesterday.  

 Anybody out there had anything similar or can help with any info.  I have been searching all week for info that I can understand.

Moderators

Karyn, welcome to Breastcancer.org! You can read much more about DCIS at the main Breastcancer.org site, in this section:  DCIS - Ductal Carcinoma in Situ. Also,  you might want to post on the DCIS forum, or the Just Diagnosed forum, both of which are very active.

Please do come back and let us know how your appointments went!

Judith and the Mods